SO.
Super frustrated today. Yesterday I drove to Boston because I was supposed to have an apt with an OBGYN today. Well I am just about to leave at 8am to drive into MGH and I get a call saying she was not able to make the apt. This all sucked because I drove down from Vermont to see her but that is ok! Instead I went out into the garden with grammy and picked some flowers and then drove to Carolines to get her dogs. We are going on our family vacation to Moody Beach next week so my mom is watching them for her (it is with my dads side of the family). I am really excited to go on this vacation, I look forward to it every year and I was so worried I would not be able to go when I was in the hospital. So it will be really special. I will not be able to go in the sun because of all the burning and pain but I will be able to read and just hear the ocean which is what always heals me. I do not know how but something about the beach is just so soothing for me, and always has been. The past week was good, I got to visit with a few friends from home which was great! I got lunch with my two best friends from high school and then my other friend came over for a visit. It was so nice to catch up with people and show them how great I am doing! Medically my finger nails are driving me crazy. They hurt so badly and they are like half off, they are stuck to the top of my finger. So they get caught on everything and I have to tape them down now. My eyes are still watering like crazy, but I have this steroid ointment that I am putting on at night so we will see if that helps at all. I am still on the pain meds but we are on a weaning plan so I am ok with that. Anything to avoid what happened last time with the withdraws, because that was miserable. Anyway, that is it for right now. I am working on finding out how to start an SJS foundation, so if anyone has ANY idea how this works can you send me a message? I am doing lots of research and am finding dead ends and websites for survivors only in Canada. That doesn't help. I want to get a group of us SJS survivors here in the US so we can talk and share our experiences and help others who are going through this horrific thing. Or if anyone reading this is a survivor please send me a message! I want to get the word out there that I am looking for a support group to start. My ideal thing would be that we have cards or something that we leave in doctors offices or give to hospitals to give to SJS patients so they know they could call or email and ask questions and we could create a support system.
Anyway that is what I am spending my time doing now. Any help or ideas would be awesome! If there is any way I could help someone and make this less scary or overwhelming I want to do that, because I know my family and I could have used this big time.
I will post some pictures from our vacation next week when I am at the beach :) Not in the sun of course.